Columns The MS Wire - A Column by Ed Tobias My Lemtrada Journey: Observations at 18 Months After Round 2 My Lemtrada Journey: Observations at 18 Months After Round 2 by Ed Tobias | November 1, 2019 Share this article: Share article via email Copy article link It’s time for another update on how I’ve been doing with my Lemtrada (alemtuzumab) treatments. The bottom line is that I’m doing well. Lemtrada is a disease-modifying therapy (DMT) delivered in two stages. The first stage entails a series of five daily infusions, while the second stage involves three daily infusions, given a year later. The medication has shown some success in slowing or halting MS disease progression in many, and has been seen to improve symptoms in some cases. Two stages of infusions are enough for most patients, though some need a third round. Knocked for a loop Lemtrada seems to have been effective for me. But it is a roller coaster ride of uncomfortable side effects, including severe fatigue in the months following the first round of infusions. After about two months, I was knocked for a loop. At the time, I wrote: “On several days it was very tough getting out of bed. Other days I felt good when I woke up, but then I took a dive in mid-afternoon and had to head back for a nap for a couple of hours. Many nights involved getting up for multiple ‘pee trips,’ which didn’t help my energy level. Add to this one middle of the night and one middle of the afternoon episode of fever and chills (which were handled with 800 mg of Ibuprofen) and it’s made for an uncomfortable ride. One day I finally listened to my body and spent the whole day in bed. It helped, but it didn’t stop the coaster.” The right choice? I questioned the wisdom of Lemtrada treatment for me. But after about 4½ months, I began to feel sharper and better able to focus on tasks. My wife told me she thought I was walking a little better. I felt less stiff in the morning and I could subtly flex my left foot, which has foot drop. A year after the first round, my bowels became slightly more regular and my bladder control improved. But a month later, I caught a cold. Colds typically last three to five days for me. This one hung on for about three weeks, and it increased my fatigue level. I heeded my neurologist’s advice to “listen to your body” and took a lot of naps. The ride gets smoother Over time, the dips in the roller coaster have become fewer and my neurological exams have been good. At 10 months after round two, my bladder control was so good that I was able to go on a bumpy, 90-minute bus ride through a Florida swamp with my family. That would have been impossible before my treatments. This week’s 25-foot speed test at the neurologist’s office confirmed that I’m continuing to walk a little faster. My brain MRI shows no changes (though it’s been unchanged for years), my balance with my eyes closed and arms outstretched is very good, and my hand-finger dexterity, measured with the nine-peg test, has improved for three exams in a row. The dips into unusually bad fatigue have ended. On the other hand, the spasticity in my left hip has increased and the hip’s range of motion has decreased. Trying to sit cross-legged is very painful. Is that an MS symptom that has worsened despite my Lemtrada treatments, or could it be arthritis? I plan to experiment with gabapentin, which my neuro thinks may ease both the spasticity and the pain. She’s also suggested trying CBD — yes, she’s a neurologist who is hip to nontraditional treatments — which I’ll do. Overall, I think that Lemtrada was the right choice for me. But at 71, I’m done with DMTs. Thanks, Lemtrada, for the help. As I’ve said before, my drip stops here. You’re invited to visit my personal blog at www.themswire.com. *** Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis. Print This Page About the Author Ed Tobias People say to write what you know and Ed Tobias knows about MS. He's lived with the illness since 1980, when he was 32 years old. Ed's a retired, award-winning broadcast journalist and his column combines his four decades of MS experiences with news and comments about the latest in the MS community. In addition to writing his column, Ed is one of the patient moderators on the MS News Today Facebook, Twitter, and Instagram sites. He’s also the author of “The Multiple Sclerosis Toolbox: Hints and Tips for Living with M.S.” Ed and his wife split their time between the Washington, D.C. suburbs and Florida’s Gulf Coast, trying to follow the sun. Tags disease-modifying treatments (DMTs), Lemtrada (alemtuzumab), side effects Comments Christine Ed, as always I find your updates interesting and enlightening. I turn 65 next week, and given the choice of Lemtrada or Ocrevus, chose Ocrevus as my current DMT. Frankly, the side effects of Lemtrada concerned me. Not enough real world experience available at that time. No one reports on DMT experience for those 65 and over except for you. Plus my neurologist, who is in his early 60s, who also has MS, reluctantly admitted he has been on ‘B cell depletion therapy for several years and he not only makes it to work every day, but displays a level of mobility and energy I found inspiring. I might have thought harder about Lemtrada, had your experience been further along. But I think I made the right choice. So far, except for some increased fatigue after my first full dose in July, I’ve found Ocrevus to be the best choice for me. My blood work looks good. I feel better, a little sharper and my balance is better. What was shuffle and lurch and required a cane, or walker, is now slow walking without support on flat surfaces. I still need a cane outside, but I can live with that. My 25 foot walking test has improved slightly. As you’ve said frequently, and as my Neuro says, we are all different and react differently to these medications. Avonex had no effect on me, including side effects, and I was not a candidate for Tysabri because of JCV levels. Gilenya raised my liver enzymes to alarming levels. My disease (RRMS) is quite active and I had 2 serious exacerbations, while in between DMTs, one of which sent me to the hospital by ambulance. So much for the experts who claim MS is less impactful as the immune system ages. So thank you for your continued report on your experiences. If for some reason, I need to get off Ocrevus, it’s nice to know that someone over 65 is taking Lemtrada and is tolerating it successfully. Reply Ed Tobias Hi Christine, Good to hear from you and thanks for your extended comments. I'm very glad that Ocrevus seems to be working well for you. I've read and heard far more positive than negative reports about both Ocrevus and Lemtrada. As for the side-effects, I think it's a toss-up between the two. Yes, those of us of Medicare age are frequently invisible to those who are in the DMT business. I've recently become active with a group called iConquerMS, whose goal is more patient involvement in MS studies. They, specifically, aim at getting patient input inserted into the ground-level studies of new DMTs. I'll be pushing for more representation from us seniors. Please check-out www.iconquerms.org to find out more. Ed Reply Cyndi Thanks for the Lemtrada update. The roller coaster effects are no doubt troubling and frustrating. Glad to learn you are doing better. I am currently at the end of two years on Ocrevus and relatively happy with it. No side effects, some worsening in walking ability, but stronger cognitive/verbal. At my next appointment in two months, my neurologist is going to talk about trying Mavenvlad (or the similarly named other one). I will also ask her about Lemtrada. In truth, I guess what we all want is a miracle drug and a crystal ball to see that it will “work on me“ to stop and reverse the ravages of SPMS. I want to keep fighting, but I don’t want to constantly change DMTs just to have the newest shiniest toy. Knowing that I am better off than so many suffering from our disease, I hope I am not developing a defeatist attitude, becoming complacent, or thinking that where I’m at is “good enough“. Reply Greg Hi Ed. Glad to hear Lemtrada is working. I’m also older, 58, and completed round 2 in August. Didn’t miss any work, other than the days of treatment, after either round. In general, I think my fatigue is less, and walking about the same (I walk 3-4 miles a few times a week). A few years ago I could do the walk in about 50 minutes, now it’s closer to an hour (is it aging or MS?, can’t tell). Leg spasticity is also somewhat worse though not too bad, started taking 1/2 a tablet of Baclofin at bed time, didn’t take it at all before Lemtrada). Hard to say if these DMT’s help older folks who have had MS for decades (about 20 years since diagnosed). I think exercise and movement is as effective at this stage as any therapy. Also, like you, I opted for Lemtrada so that when I go on Medicare when I turn 65, I won’t have the huge financial burden of DMT costs. I may go for a third round in a few years as extra “insurance “ while still working and have good commercial insurance. Reply Ed Tobias Wow, Greg. I wish I could walk 3 - 4 blocks, not to mention 3 - 4 miles. Maybe if Lemtrada (or, for that matter, any DMT) was available back when I was diagnosed I could. So, I'm glad to hear you're hitting your MS hard to try to maintain the mobility that you have. My mobility seemed to take a slide about twenty years after I was diagnosed so you may be putting up a roadblock at just the right time. Good luck, Ed Reply Tom H. Glad to read that you are doing well on your DMT. At 37yrs old and a military veteran, I guess I have the strength and ability to tolerate Ocrevus treatments better than most. No major side effects but also not a miracle drug, at the end of the day I still have MS! The drug does ware off around the 5 month mark, so the month leading up to my next infusion is not great! I had 4 flair ups in one month, before my last infusion. After a year of treatments, my symptoms have stabilized and no new lesions on my most recent brain and spinal MRIs. So it is performing as advertised, slowed my progression. Glad I took the early and aggressive treatment path. Neurontin has helped, particularly with my trigeminal neuralgia; however, it takes a few weeks to kick in and you can’t miss a dose. I alter the doses depending on my symptoms and range from 300mg to 1,200mg daily. Normal dose on good days is 300mg before bed. In addition to a good diet and various vitamins, my daily cocktail of zofran, baclofen, neurontin, and oxytocin (5-10mg) allows me to have a somewhat normal life. The CBD sold in stores, like CVS, is from hemp and not very effective in my opinion. Get it from a licensed dispensary, if legal in your state. Honestly, products with a combination of low THC and high CBD work the best. On a side note, I did decide to get the flu shot and tolerated it well! Reply Ed Tobias Thanks for all of the detailed info, Tom. It helps us all. I'm glad that you're also doing pretty well. Ocrevus, of course, only attacks B-cells, which repopulate very quickly. I guess they return sooner for some than for others. At least you've stabilized. FYI, Ocrevus isn't the only DMT that seems to wear off before the next infusion. I've heard some people who are being treated with Tysabri say the same thing, though that wasn't the case for me when I was being treated with it. Ed Reply Stephen Malouf Ed, I think Lemtrada has been working for me as I am past Phase 2 since January 2019. There are no longer any additional brain scars. However, I know I am not out of the woods. The Tsabri was not working for the 18 months I was on so my doctor decided to put me on Lemtrada in early January 2018. Not sure if a change in my diet also helped as I was a former type 2 diabetic and full of cholestorol which may have damaged my auto-immune system and the dormant MS (family tree) gene may have triggered out in my body. Glad to see you are also getting better ... My secret is to eliminate stress and sleep more. and of couse try to eliminate sugar and only eat healthy. Reply Ed Tobias Hi Stephen, Good to hear that it's working for you and that your diet helps as well. I'm retired, so stress is minimal and I have opportunities to nap. But eliminate sugar? Sorry, that's one of my pleasures in life :-). Ed Reply Brad Dahleen Ed, I really enjoy the updates! I am 56 and have MS for 30 years. I remember when I was first diagnosed and trying to learn as much as I could about the "crippler of young adult" disease. I went to the library (no internet yet!) and their wasn't much hope. Then came Betaseron and it seemed like all of the sudden their was hope! Well, I have been on so many different drugs over the years just to buy time for the cure. Last year at this time for whatever reason my MS got very agressive and I was forced to do something and I chose Lemtrada. You and some others helped me make that decision. I am now 9 months into this and like you wrestle with at times immense fatigue. My walking and ballance are exceedingly improved. I can now walk about two hundred yards (with trekker poles) compared to 30 or 40 feet a year ago, and attack has for the moment at least stopped! Lemtrada is a scary drug but I am more afraid of MS than Lemtrada, so I press on! Love your thoughtful insights, all the best to you! Brad Dahleen Reply Ed Tobias Hi Brad, Thanks for taking the time to drop a note. I'm so glad you've found a DMT that's working for you, whether it's Lemtrada or a different one, and it thrills me to know that I played a part, however small, in that decision. Fight the fight, my friend. Ed Reply Leave a comment Fill in the required fields to post. Your email address will not be published. Your Name Your Email Your Comment Post Comment
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